Just wanting to connect with other people that have Sjogrens with some type of neuropathy involement. Please list your symptoms and any medications you take to help. I am trying to decide on medications to take and want to focus on the meds that deal with the cause like the inflammation. Please any infor you have will be helpful to me because I don't think I have any tears left in my body..can't cry anymore and I need some input from others that know what I am going through. Thanks Mary

Me again..I think we are not allowed to recommend medications on here, but if you list the meds you take and if they work for you or not that would be helpful. I will NOT assume that you are recommending any meds for me to take. I am basically just researching to see what meds are out there being used. Thanks Mary

Please do a search on Silverlady. She was once very active here and has many posts about her experiences with Sjogren's.

I have SjS diagnosed, but I have some issue with the way it is diagnosed. The diagnosis of SjS is very loose these days. Do you want seronegative? Seropositive ANA, or ENA? Lip biopsy?

I don't post the meds I am on for privacy reasons.

I am on IVIG for my neuropathy and elevated ANA.

Good question..I am seronegative at this point with neuropathy involvement, but I want to hear from all those with sjogrens diagnosed or suspected with neuropathy going on at the same time. I too have my doubts about how they diagnose Sjogrens....thinking the criteria needs a check up. Dr. Birnbaum at Johns Hopkins Sjogrens clinic also agrees. Thanks for your reply

I will be really frank. I think a lot of people have side effects from meds, and are diagnosed with SjS. So do a lot of people with PN, have a diagnosis of SjS....and neuropathy can cause dry eye and dry mouth. I am not convinced of my diagnosis, because I am not positive for SSA or SSB, altho I have every other criteria met.

There is such a thing as Sicca Syndrome, and a lot of people with that feel they have SjS....when what they do have is due to some other etiology.

When I have a + SSA or SSB, I will believe I have SjS....same as when I have a + SCL 70, then I will 'have' Scleroderma, despite the fully nucleolar ANA at this point. I do meet the criteria for Lupus as well, even tho the antismith is negative, the C4 is low. C4 can be low in lots of autoimmune disease, however.

Many, many other autoimmune conditions have Sicca as a symptom as well.

I had Sicca for many years prior to getting a highly + ANA. I am not sure when the onset of neuropathy was, but I would say 10 years prior to the diagnosis of it.

I know I have some autoimmune process going on, and I know I have neuropathy. I am not fully sure the two relate. I do not have the specific antibodies, and they seem to stick with that criteria for all other autoimmune diseases in general, but not SjS. Some people seem to have just sicca and others like myself are half dead, and we have the same disease?? Eh, hard to believe.

SjS is becoming a dumping ground diagnosis.

Sorry to be so frank, but I think they need to figure out what is Sjogren's and what is Sicca.

Here is an algorithm for diagnosis.

http://www.doh.wa.gov/hsqa/fsl/Docum...-Guideline.pdf

I agree that some people have the wrong diagnosis and I feel bad for them because it is due to the lack of knowledge by the many doctors who do not know what else to do with these patients. Many insurance plans including mine will NOT pay for long term medication without a diagnosis of some kind and since many if not all of the autoimmune diseases share many of the same medications for treatment..if there is a real treatment, then I figure go ahead give me a diagnosis and I will continue to research on my own to see if the diagnosis is correct. Right now I am in Limbo without a clear diagnosis..My doc says I have an undifferentiated connective tissue disease because I have all the symptoms but no bloodwork to back it up. I can't sit here without at least trying some kind of medication..immune suppressant..anti inflammatory...something. So in order for my insurance to pay for this medication I will need a diagnosis. I like others have been very sick for a long time..23 years going from doctor to doctor all telling me bloodwork is negative so I must be fine. Hard to believe that when death seems one step away. I have never taken any prescription medication up to this point for my illness besides b12 and vit d, but it is getting to the point where I need something to at least try to fight this whatever it is. Even though am negative on all autoimmune bloodwork that can be taken, I have severe body pain, and severe mucous membrane dryness, painful and swollen glands in face and neck, raynauds, and Neuropathy which could be symptoms of many autoimmune diseases. Could be Lupus, but I don't have bloodwork or facial butterfly rash...docs say can't have that one. Can't have MS cause I can visually tell the difference between blue and green......at this point I really don't care which one I have just as long as my insurance will pay for some kind of meds to see if it will help me get through another day. So I do understand your frustration with the improper diagnosis, but until more research is done to differentiate clearer lines between the autoimmune diseases, many of us are going to be hobbling around with the wrong diagnosis. My doc is trying very hard not to label me with one or the other, she is good, but until she does, I get no meds. Take care Mary

I was placed on IVIG for small fiber neuropathy, for a + lip biopsy, with a clinical diagnosis of Sjogren's. Undifferentiated Connective Tissue Disease IS a diagnosis....it is not a non-diagnosis. UCTD is when one has symptoms of several autoimmune disease, but fails to meet any one specific disease, and it falls along the Scleroderma spectrum. Given you have Raynaud's, it seems to me that you fall along that spectrum. Given they have diagnosed this, and you have neuropathy, why not treat you?

UCTD means they have determined you have autoimmune disease.

You may seroconvert much later....as I did....and then they may still hem and haw...as with my highly+ANA with nucleolar pattern...alas.

Also consider having Igenex run a Lyme test on you....just a thought.

I agree you should be treated.

Which treatment do you think would be best for you at this time?

Perhaps you should ask why you are not being treated. Challenge it.

No, your insurance company should not stand in the way of what your doctor recommends. I successfully fought mine. You may need to fight for the treatment that you and your doctor agree on.

And yes, all the symptoms you describe can be from autonomic neuropathy due to small fiber degeneration....what that is due to, is always a huge, huge journey of diagnosis....not always fruitful.

Also, there is a great deal of emphasis on ANA, when doctors after you get the + ANA, will then disregard it. It is really very frustrating.

Often to get IVIG, some insurers want you to have failed drugs like Plaquenil, methotrexate and steroids....Check your policy and see if it requires a positive ANA, or if polyneuropathy is covered. I don't understand why they have not at least offered you Plaquenil.

I have the +ANA, and they are still dinking with diagnosis, other than Sjs, but I do get IVIG, thank goodness. Keep trying. And it did take me decades to figure out I had autoimmune disease....I am not sure that Sjogren's is the answer tho.

Sjogren's is not UCTD. Neuropathy is not SjS. Neuropathy can be autoimmune or not autoimmune and it causes the same symptoms, all of which are extremely similar to autoimmune disease. Docs are increasingly reticent to diagnose lately, due to the huge overlap. It does leave people in limbo, me included. But I do get IVIG, which, if you ask me today, now that I am over the last post infusion crud (severe migraine, puking, flu like feeling for 3 days), I feel pretty darn good today, but nowhere near normal....better tho...lots better. Biggest difference is more energy.

BTW, if Birnbaum recommends you should get treatment....usually if he writes a letter for you....you can raise a stink with insurance. It is Hopkins afterall.

I guess what I am saying is, is he states you have SjS, even if you have doubts, you should have the criteria for some kind of immunosuppressive treatment. I think that docs are somewhat fearful of instituting immunosupressive treatment until you are half dead, due to the problems that it entails. They don't want to damage some one and have it not be inflammatory, have it due to something else.

Also have you tried Lyrica or Cymbalta or some of the other stuff for neuropathic pain? It may help.